My fifteen-month-old son Harry is fascinated by my ostomy bag. He crawls across to me while I’m eating, reading or otherwise relaxing, grins impishly and whips up my T-shirt like a magician unveiling a trick: ta da!
He still doesn’t quite know what to make of it. His eyes fill with wonder and then look up at me as if to say “what is this thing Dad and when am I going to get one?” I’m happy to let him prod it for a while – after all it’s nothing to be ashamed of – but as soon as he starts trying to rip it off I politely shoo him away and draw my shirt back down.
Seconds later, with a shriek and a cackle, he is back at it. Up. Down. Up. Down. It never ceases to amuse him.
Now he has discovered the location of my bag stash and his new favourite activity is methodically scooping up all my pouches and seals with his tiny pink pincers and plunking them on to the floor like potato peelings. I pretend to be exasperated by this mischief, which only delights him further.
The truth is I am even more delighted than he is. What a transformation has taken place in my life in the last 18 months! To see this object, once the cause of my worst nightmares, now morphed into a source of childish fun, is cause for unbridled celebration.
I was diagnosed with Crohn’s Disease at the age of 14 and struggled with it for twenty years without once giving serious thought to a surgical solution. I tried every medication available, and many more that had no scientific backing behind them. I saw naturopaths, homeopaths, sociopaths and psychopaths and gave money to them all. I endured hospitalisations, abscesses, fistulae, months and months of bleeding and severe weight loss, years of being housebound, and other things so bad I still can’t bring myself to talk about them…and yet whenever a surgeon suggested to me that all my misery could end if I just had my rotten large intestine removed from my body I closed my ears and sang the same old protest song. Surgery, no way! The bag, not in a million years!
The worst period of all also ended up being one of the most life-changing. In early 2009 I spent 11 nights in a hospital ward at St Vincent’s in Sydney sharing a room with 3 old men with noisy bowel conditions. I’d been very sick for the last three months and had lost more than 30 kilos. I looked like a skeleton with a moustache. Things were desperate.
The irony about hospitals is that one of the most crucial things you need to feel better is sleep, and yet hospitals seem to go out of their way to stop you getting it. All through the night there are lights blinking, alarms going off, people waking you up to take your blood pressure or put tubes in your ear. Every morning at 6am, just as I was finally dozing off, the nurses would come in, fling the curtains wide and drain 13 vials out of my blood out of my arm with no explanation whatsoever. What did they do with the blood? No-one told me. But after ten days of this happening they told me I was low on blood and needed a transfusion. As I watched the new blood trickling into me I wondered: “Is that mine?”
My wife Kamilla was an angel throughout this ordeal. I’m sure there are many of you reading this who could say the same about your own partners, at least I hope you can. To be loved in these circumstances is a miraculous and beautiful thing, more precious than anything in the world.
We’d married early, at the age of 22, and our love had been severely tested just a year later. My initial Crohn’s flare at 14 had been nothing compared to the first relapse in my early 20’s. It’s no surprise to hear that the guy who wrote that unforgettable dinner scene in Alien (arm yourself with a sick bucket and Youtube it if you don’t know what I’m talking about) had Crohn’s. It’s like there’s a monster living inside you, eating you from the inside out. The illness takes over your whole mind, becomes your whole world. Only an experimental and very expensive regime of heavy antibiotics saved me that time. It took three years until I was ready to face the world again. Kamilla stood by me throughout, albeit with some tough love towards the end, to lift me up off the sofa and march me out to face the world again. I’m so thankful she did.
The 11 nights in hospital in 2009 happened just months after the release of my first album. I’d been all set to go and live out my rock and roll dreams overseas. Instead I spent night after night on my knees on a hospital toilet floor wrestling with a rectal prolaps. That’s a letdown, in anyone’s language.
A few months later I started writing songs again. Guitar is usually my instrument but I was too weak to hold one so I started messing around with drum loops and keyboards instead. Soon I found myself with a whole new repertoire of quirky tunes, written in a style somewhere between funk, pop, comedy and hip-hop. I called it “Flip Flop”.
In early 2011 I unveiled these songs at the Melbourne Comedy Festival in a show called “Chronic”. I’d never performed comedy before and was terrified, but the fear was also good for keeping the Crohn’s at bay. By now I was on an injectable medication called Humira that was also helping. I’d written a lot of “jokes” into the show that were mostly greeted with awkward silences, but one night I started talking about my hospital experiences and found that people were laughing. I was encouraged. The show got some good reviews and I was able to take it to the Edinburgh Fringe and then all around Australia. By the end of the year I was telling my story to a room full of teary-eyed politicians at Parliament House.
In early 2012, with my Crohn’s just about under control, my wife and I started trying for our first child. It was also around this time that my gastro sat me down and told me I had a stricture in my bowel that could only be removed by surgery. Although she’d always respected my decision not to consider it, she informed me that the benefits of surgery now far outweighed the risks. I could have a tumour hiding somewhere beyond that stricture and they wouldn’t find it until it was too late.
A few weeks later Kamilla and I met with the colorectal surgeon. His recommendation was exactly what we didn’t want to hear: ileostomy surgery with a permanent bag. I bargained and pleaded for another option but to no avail.
In my comedy show, to make it easier to talk about the bag, I referred to it as “the iPad” (you know, it comes with a range of accessories and you can do your business on the go). I asked the surgeon if the iPad would affect our chances of making babies. He said it might. That was all the reason I needed to delay the operation.
Not long after that I went for my first fertility test. I have to say, it was a lot more fun than a colonoscopy.
Unfortunately, despite decades of practice, I flunked it, and so Kamilla and I now found ourselves plunging headlong into three bleak months of IVF consultations and treatments. Both of us fell under a heavy cloud of depression as we contemplated the very real possibility that, after all we’d been through together, we would not be able to have children.
When we got the news that only one of our embryos had survived the first cycle we were not hopeful, but our spirits were lifted when we saw our lone survivor on the TV screen in the implantation chamber. The cells had barely begun to divide in this tiny speck of life but already we began imagining its possible future – birthdays, first dates, high school formals and graduations. Two weeks later came the momentous news: we were pregnant.
When I woke up from the anaesthetic and saw my stoma for the first time I thought it was the most adorable thing I’d ever seen. Instantly I gave it a name: Spongebob. Whether it was the relief of knowing that my rotten colon was now gone, the euphoria of taking such a positive step for our future, or (more likely) just the incredible amount of painkilling morphine and ketamine rampaging around my body, I felt delirious with happiness. My wife was sitting in a chair beside my bed, her belly swollen with our baby boy.
On April 24th last year Harry arrived into the world, early and urgent, and spent the first few weeks of his life with tubes up his nose surrounded by bleeping machines. This time it was me who was the strong, capable one, looking after him and his mother – Crohn’s free and medication free for the first time in a decade, heavier, healthier and happier than I’ve ever been.
Harry, you truly are a magician. One day, I hope you will understand what a gift you have given me. Until then, play on you little rascal, your daddy plans to be around for a long while yet.
Written by musician/comedian and award-winning health advocate Luke Escombe in 2014